Being Patient

Once a hard-charging cardiologist, Thomas Graboys '66 struggles to cope with the devastating effects of Parkinson's disease When Thomas Graboys '66 began to notice the physical and cognitive symptoms of Parkinson's disease, he tried to dismiss them as the products of stress and grief; his first wife, Caroline Rigby Graboys '67, had recently died of […]

Once a hard-charging cardiologist, Thomas Graboys '66 struggles to cope with the devastating effects of Parkinson's disease

When Thomas Graboys '66 began to notice the physical and cognitive symptoms of Parkinson's disease, he tried to dismiss them as the products of stress and grief; his first wife, Caroline Rigby Graboys '67, had recently died of colon cancer. But eventually, the handsome and athletic Boston cardiologist—on the faculty at Harvard and part of the team of doctors that won a 1985 Nobel prize—had to admit that although he was only in his fifties, he had a serious degenerative disease. In his memoir Life in the Balance—which the New York Times called "a small wonder" when it was published last spring—Graboys chronicles his struggles with Parkinson's and a related form of dementia, which have forced him to retire from medicine and sharply redefined his life.

Cornell Alumni Magazine: How have Parkinson's and dementia affected you?

Thomas Graboys: Trying to communicate is extremely difficult. In general there is a lot of unhappiness, frustration, and anger. I have difficulty with cognitive function and terrible problems with memory, maintaining a train of thought. It's interesting when people tell me, "You sound so good." People kind of automatically hear if your voice sounds reasonable. And I can make it sound reasonable by increasing the amplitude and speed, but then it falls back and I . . . [His voice trails off.] What just happened was that I lost my thought, perhaps because of a sudden pulse of neurochemicals in the brain. And without those I can't function well at all.

CAM: You played three sports in high school and college; are you still physically active?

TG: I can't ski or play tennis anymore and that's really sad. Everything is this loss of control associated with a need to compensate for it. And that brings me to spinning classes three times a week; I also work with a trainer and do massage and yoga. If you asked my wife what is the most important part of my management, she would say keeping me vertical. You have to keep pushing and have a good attitude.

CAM: Are there any other symptoms?

TG: The major problem I have is orthostatic hypotension. It means that your blood pressure tumbles down without any awareness that it's going to happen. It can occur at any time and you can potentially die from it. If I don't get myself horizontal, or at least sitting, I can pass out. And that is not a pleasant experience—it gives a sense of a veil going over my face and I can't see. And less than a minute after that, it's gone. It has happened when I'm taking a shower, walking upstairs, or a hundred other times, and it's a progressive problem.

CAM: How would you describe your reaction to the disease's onset?

TG: Total body denial. Every molecule of my persona was wrapped around maintaining my status—making sure I could still teach, write, continue my research. Every day there was the fear of it all crumbling down. I'd wake up with it, I'd go to sleep with it. It was horrendous, struggling to maintain the status quo.

CAM: How did you finally decide to stop practicing medicine?

TG: The amount of energy necessary to see patients was very difficult, and I obviously didn't want anything to happen to them. So I asked my group, 'What do you think I should do?' They said I should retire. But I had spent thirty-five years taking care of people; I didn't want to have it taken away. Even something as minor as driving a car, which is the last bastion of independence—I had to give that up a week ago, and it was brutal.

CAM: How has being a physician shaped you as a patient?

TG: I had a certain level of arrogance; in my core I felt I knew better than the doctors, that I knew more pharmacology. I was in a constant struggle with my family, and particularly my wife, with taking the medication properly, because these drugs have potentially significant toxic side effects. With Parkinson's, you feel lousy not taking the drugs, you feel lousy when you take the drugs—you feel lousy every day. There's no free lunch with these drugs. They're with you for life. You're tethered to them. If I don't take the pills now, in the next hour I could go into "Mayday! Going down!" And that's how it feels.

CAM: How has this experience changed your perspective on the doctor-patient relationship?

TG: Taking care of patients in an unhurried manner, so you are focused on them—that is the most important. What people want is time with a physician, not to have him running into the examining room and listening for three minutes because we have to keep the volume up. We have to be mindful of that. We can't let economics rule the roost.

CAM: What has been the reaction to your book?

TG: Beyond my wildest dreams. I've received nearly 500 e-mails, cards, letters. They bring tears to my eyes, the stories. There is a universality of appeal to the book that surprised me on the one hand, and on the other hand it didn't. It underscores the fact that this is not simply a book about Parkinson's. It's much more about being able to function or not.

CAM: In the book, you admit that you concealed your symptoms when you were dating your second wife, even hiding the fact that you fainted on your wedding day.

TG: I remarried to a woman, Vicki, who is quite extraordinary—she didn't sign on for this cruise, but she's sailing on it. It would be extremely difficult to continue without her. I discuss our relationship in great detail in the book.

CAM: You're also candid about the possibility of choosing to end your life.

TG: I have put it in basic terms: I want to be in control. If I'm incontinent and senile and I don't know who my grandchildren are, then what is the point of just being a massive molecule waiting to be channeled somewhere?

CAM: Having treated cardiac patients for decades, how would you say that Parkinson's is different from other life-threatening conditions?

TG: With most diseases, they start and they have a life and then they stop. With diseases like Parkinson's, Huntington's, ALS, Alzheimer's, and multiple sclerosis, they are with you. They're part of the fabric of your life. Parkinson's is a disease that is pervasive on many levels, and it's going to be with us more and more as the population ages. But I try to be positive. It's not curable, but it is definitely manageable. I didn't know how I was going to adjust to this part of my life, but I'm an optimist.